What I Need (but May Struggle to Ask for) During a Chronic Illness 'Mega-Flare'
I’ve been living with chronic illness for nine years and in that time, I have come to understand how challenging it is to experience a flare that lasts for several days, weeks, or even months. Often, these flares are more intense and painful than normal and it is difficult to explain their impact to friends and family.
One of the tough realities of having a chronic illness is that both you and the people in your life get used to seeing you navigate physical pain on a regular basis. Frequent flares become a part of life. And for better or worse, you and your relationships adjust to that truth.
When this becomes the norm, others can struggle to understand and comprehend the depth of these extraordinarily difficult flares that are significantly more painful or persistent. Time and time again, I find it challenging to differentiate the experience and communicate the severity of entrenched, treatment-resistant, prolonged pain compared to the more typical ebbs and flows that are part of my “baseline” experience of chronic illness.
When a prolonged flare of elevated intensity is ongoing — symptoms kicking up from “normal bad” into the realm of “extra bad” — the level and type of support I need from others shifts too.
From the outside, others can’t necessarily perceive anything different about what I’m going through — even as a flare tears through my being with white-hot intensity for weeks on end.
I have found that the deep irony of these intense and prolonged flares is that they demand every last ounce of my effort and energy to manage the day and my pain. And although I might be desperate for more help, sometimes, simply surviving doesn’t leave me with any additional stamina to open the conversation with people I love about just how hard things have been.
In addition, during these pain cycles I can become tired of my own, “still really struggling” updates. I feel exasperated with my reality — by having to answer the, “how are you doing today?” question with, “things are still really bad,” over and over again.
Even though it is the truth, sometimes I still feel like I’m complaining. And often, I feel like my friends and family don’t know how to reply.
These intense flares can be mysterious both in their arrival and departure. They often aren’t patterned, and the “lead-up” or escalation of symptoms is only visible in retrospect. When I’m smack-dab in the middle of a “megaflare,” it’s hard to escape the worry spiral that leads me to think that I must be doing something to contribute to my worsening state.
Inside these flares, I remind myself as often as I can remember that the intensity of the pain I am experiencing is not a reflection of the effort I’m putting into managing my health and well-being.
As I look back at my yearly calendar, I can see that some months, I have a surprising threshold and resilience for appointments, socializing, and projects. Other months, even when I’m mindfully slowing my life down and being extra protective of my energy, an entrenched flare sinks in and doesn’t let up despite all of my best efforts.
One of the most helpful forms of support, when I’m going through a flare that’s surpassed “normal challenging” and soared to the realm of “extra challenging,” is recognition and validation of my reality from an outside source; family, friends, or a member of my medical team.
The isolation and pain that accompany a “mega-flare” often cause my thoughts to weave a storyline about how others perceive my lack of ability to “show up” in the way I want to. When a friend takes the time to send me a text and say, “I know things have been hard lately and I just want you to know I see how tough you’re being and I’m totally here for you” or offers to come over and walk my dog because they know I’ve been extra stuck in bed — it means the world.
From my closest circle of support, help with practical life tasks also means the world. Sometimes my husband will type replies to text messages that have built up over weeks as I dictate them aloud; a normally simple task that feels too overwhelming for me to tackle solo. My Mom, who lives across the country, finds ways to reduce the stress of “life admin” by ordering groceries to be delivered to my house, calling insurance reps or doctors’ offices, and sending me small encouraging gifts from Amazon. My little brother has perfected the listening art of letting me fall apart, spilling my fear, worry, and frustration out loud — and then holding space for me to talk myself back to a more stable place. My dad, steady as a rock in a river, knows how to be present with me when I’m at my most terrified and hopeless with presence and love, waiting for the waters to still and calm to return.
Inside a severe flare, each small act of support from loved ones feels like a life raft.
There are times in an entrenched chronic pain cycle where the waves are so high, so continuous, I feel utterly hopeless. Being locked in a very small room with very big pain can make you feel like there isn’t a way out. Every time someone notices and validates what I’m going through, it’s like they open the door a small bit and allow some light to spill in.
If this is something you’ve found yourself navigating, please know that what you’re going through feels really hard because it is really hard. Struggling does not mean that you’re coping poorly or doing something wrong. It simply means that you are navigating something very, very difficult.
When you find yourself in seasons of more manageable and lighter pain, practice having conversations with your people about how they can help you when you experience a megaflare. Give yourself and your loved ones lots and lots of grace. Unfortunately, communicating about chronic illness and support isn’t something we are taught in school, and what we are taught in society and the media is often a gross misrepresentation of the chronic illness experience.
Additionally, your chronic illness experience is as unique as your fingerprint. The type of support you need is singular, as is the type of pain you experience and its particular patterns and struggles. Remind yourself and your people that you’re navigating uncharted territory, and be gentle when you need to reroute.
Unfortunately, there’s no magic fix to teaching people how to help you navigate entrenched pain cycles — but if you use love as your GPS, you’ll continue to move in the right direction, lighting small candles in that dark room of big pain to make it more bearable and remind you that you are not alone.